Ok. Let me go back a little bit and try to explain.
Last week, I had my normal two-month infusion. I fly home to Atlanta, I go to the hospital, I get an IV, and I get some poison pumped into me for approximately 2-3 hours. This ridiculously expensive poison shuts my overactive and crazy immune system down, thereby helping to put my autoimmune disease in remission and allowing me to live a somewhat normal life. Johnson & Johnson probably prefers that I call this poison "medication" (which it is), but at $14,000 a pop, I can call it whatever I want to.
Anyway. After my infusion last weekend, I started to get this rash on my face. It started on Friday night I think ... it wasn't visible and didn't itch or hurt at the time, but my cheeks felt weird as a washed my face. There wasn't really much of a difference the next day, but I could definitely feel some roughness on my cheeks as I went about my day, and it still felt weird as I washed my face (my skin is normally very smooth. I have Irish skin). The next day (Sunday), it was itching, I could feel and see the raised skin, and it was bothering me (although my dad said he couldn't see it). On Monday, it was red, seriously itchy, somewhat painful, visible, and my cheeks were swollen a bit. I happened to be visiting a few doctors that day, and they both noticed it.
The point of this somewhat lengthy description of my face is that something was causing said rash. My PCP (that's primary care physician—not the drug PCP that makes you go crazy. Just wanted to clarify that) said it could be an allergic reaction to the Remicade (the aforementioned $14,000 poison). Or it could be lupus.
I did a little Googling (trade secret), and got a little info about lupus after my doctor spent 10 minutes talking about it (a little too long for my comfort). Lupus is another autoimmune disease that is completely different from Crohn's (my current autoimmune); the only similarity is that both develop from an out of control immune system. According to the Mayo Clinic, some of the main symptoms of lupus include 1) a butterfly rash that appears on your cheeks, 2) a rougher rash that appears ... wherever, 3) problems with cognitive functions such as seizures and weird word substitutions, and 4) anemia. There are some other things that I have, such as easy bruising (I wake up with new and unexplained bruises all the time), but half these things can be side effects from all the medications I take.
I have all the symptoms listed above. Apparently, if you have four out of 11 main symptoms, you probably have lupus (we're waiting for the results of that blood test ... which can be inconclusive). I presently have three out of the 11 main symptoms. And lupus would kind of explain all the random things that pretty much just popped up out of the blue.
The seizures, for instance. The seizures came up out of nowhere right after Thanksgiving, and they haven't gone away (I'm on medication now and get to wear a super cool Medic Alert bracelet). The supposed eczema (my dad diagnosed it, so who knows what it really is/was) comes and goes, and it first appeared at relatively the same time. The cognitive slip-ups (I called one of my best friends "Mexico;" I say things like, "I can't wait to get bed so I can go to home," or "I picked up the call to phone mom," etc., etc.) developed shortly thereafter. I just assumed my mis-speakings went along with the seizures (brains are apparently very complex ... that's all my neurologists seem to know, and that's what they keep telling me). But it might make sense if it was more and these things were all linked together.
Anyway. My point isn't that I want to have lupus. Obviously. I have enough on my plate and plenty of other little things to keep me (and my doctors) busy. But the symptoms kind of make sense. And I feel like it's a lot less scary than the other option: an allergic reaction.
This is the second biologic medication I've been on to try to treat my Crohn's. I don't really understand how biologics work, but they're made with antibodies (some from humans, some from mice). Somehow those antibodies affect the Tumor Necrosis Factor, which somehow affects my immune system, which somehow makes my disease go into remission (or at least makes the symptoms tolerable). They can also cause allergic reactions.
Which is exactly what happened in the fall of '07 when I was on my first biologic medication. It worked great for about 4 months, but then I got some hives around the injection site (this was a twice-monthly injection instead of a two-month infusion). Of course the drug information stuff said that hives were something you needed to tell your doctor about right away, but—me being me—I took some Benadryl and went to bed. The hives went away and I assumed all was fine. But then the medication stopped working. I got really sick again. And then I ended up being hospitalized with an allergic reaction to the medication (worst pain I have ever felt in my entire life. It was a 12 on the pain scale, which only goes up to 10). So, yeah. I obviously stopped injecting myself with that poison and started getting IV treatments with the new poison. But not until I'd been hospitalized twice for the allergic reaction, though, because the doctors weren't positive that's what it was (the drug was really new and very few people had experienced that particular reaction). I had the entire gastroenterology department come observe me in Georgetown ... I'd say 15 fellows in all. Oh yeah, and they wanted me to inject myself "one more time" just to be sure. Yet another reason I loathe Georgetown. I think I might've said something about injecting one of them ....
But this is why I kind of hope that I have lupus. Again, I don't actually want to have it, given that I'm not a crazy person; I'm just more frightened of the other possibility.
Sure, there are other drugs out there left to try (well, I think there are only two left to try, and one of them happens to be yet another biologic, which I am somewhat skeptical about. The other one can cause fatal brain infections. I'm not really eager to try either of them). And no, a facial rash that lasts for about a week isn't going to kill me. But if experience has taught me anything, it's that allergic reactions get much, much worse. Not better.
So ... that's why I'm wishing for lupus. Actually, I'm wishing that neither of these options is the real cause; I'm hoping the doctors are wrong on both fronts. But if given only two options, I choose what's behind Door #1. The rash is fading away, though, so I think I might be stuck with Door #2.
Crazy brain infection-causing drug, here I come? We shall see ...
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